Wednesday, July 27, 2011


Today we received some devastating news. Addison has been denied AGAIN for Children's Special Health Care Services. This was a program that was going to be able to help us take Addison to Cincinnati. I feel so lost now, we pinned all our hope on this and had been waiting 6 weeks since I appealed their initial rejection. Their reason is that Addison does not have a 'qualifying diagnosis'. Obviously that's what we are trying to get, that's why this is so important. I'm tired of putting all my energy and effort into dead-ends...I wish I knew how to just make things happen for her.

She's had a rough couple of weeks. July has not been kind to us between vomiting episodes, fevers with no explanation, those awful rashes she had (all cleared up now finally!) and she's been screaming much much more. Its clear she is having a lot of pain sometimes. Her weight has hit a slump that we can't get out of. She is weighing the same as she was 2 months ago, despite her eating more than ever now. She eats 2.5 jars of babyfood and 2 ounces of cereal on top of all her bottles. For a 13 lb baby that is a LOT of food. We exceed our goal calorie counts by a mile. I wish I knew where it was all going. The laxatives she is on make a lot of her food come out totally undigested. But unless they find some other way to make her poop, thats whatwe are stuck with right now.

We have a lot of dr visits coming in August - including her 9 month checkup, peds neurology, urology and our GI specialist. Maybe someone will have a new idea. Weve been standing still for a couple of months now and nothing has changed...


  1. I'm sure you have tried this, but in case you haven't this is what I did when we were concerned about Eddie being on TPN - obviously not the same diagnosis, but you know what I mean :) I would find the doctors of the hospitals or specialty they were in and email them directly. Usually with some google searches or hospital websites, you can either call or email the doctor directly. It helped us with a doctor in Boston. He answered a lot of questions and the best part was I didn't have to go through the insurance company or a doctor visit to get answers. Just a thought/suggestion - keep up the good work - it's all for her and you are doing awesome!

  2. Sending many prayers to your Addi and family!

    I just saw a link to your blog on my birth board...fondant know if you have tried this or not...have you tried calling or emailing St Jude's and the Ronald McDonald house? Just give them the info in everything going on and let them know you need answers and help for your sweet girl and see what they can do or where they can lead you to! I hope someone can figure out what's going on for her!